It’s New Year’s Eve. … not really. I started this piece on New Year’s Eve but couldn’t bring myself to finish. Though the entire story isn’t finished, I sit here, another morning, this time in March, trying to make more headway. Back to my original draft on the morning of New Year’s Eve – This morning as I drink my coffee I realize with honestly not a bit of surprise that I don’t bother any longer wishing the new year will be happy. I don’t toast and laugh at midnight. I do offer that wish to others, more out of common courtesy, but for my family and me, we simply hang on now and hope/pray that the new year, though not necessarily happy (though who wouldn’t want that?) won’t be unhappy, tragic, fearful, or heartbreaking as the last few have been…one after another.
Like all families we have had our good years and those that were not so good. We’ve lost loved ones to age and illness, but though we’ve grieved from the bottom of our hearts like most families do, and though we’ve had trouble getting past those griefs, they were expected. We will never recover fully, but we have learned, for the most part, to live our lives again, to have happy days, to celebrate occasions that deserve celebrating, and most of all, to smile again. We’re a resilient bunch who love wide and deep, so we are most often optimistic. We saw our own world as a friendlier place, one that wouldn’t necessarily kick us in the gut or bring us to our knees. That was all before the past few years. Now we tread a little more lightly, and though we are people of faith, we take nothing for granted.
Beginning in 2014, with the diagnosis of my younger daughter’s breast cancer, our world became a landscape we’d never traveled. We had no maps or fancy navigation apps to get us from one day to the next. We had only the medical community who knew the territory, and we had to put our trust in and follow people we’d never met. It wasn’t a comfortable place to be. My daughter was young, in her thirties when diagnosed (I wrote about it here at the time). I was beyond the well-meaning words of comfort people would generously offer; I saw only my daughter, her diagnosis, and where it was taking her. I was dangerously close to growing beyond faith and prayer. Fear gripped me like it never had, and I knew that despite my need to keen like a wounded animal, I would instead be strong for my daughter; I would NOT be another worry for her, knowing she would worry if I showed my true feelings. Now, later, looking back on that time, I have learned that I wasn’t fooling her – she could see how I felt – but she at least didn’t have to deal with my wearing my worry on my sleeve, or my thinking her diagnosis and the medieval horror chamber the hospital became to us were mine to suffer. No, I knew who the real patient was. Unfortunately, for that time I forgot I have absolutely no poker face (my face instead announces my feelings ) so though my words and actions were those of a strong mom, a “lean on me, darling” type of mom, she could read me like an open book. Still, my greatest wish, after my constant plea to God for her complete recovery, was that she would know her mother was there, always there for her, and feel that maternal love she had known all her life. Her mother was there, and God was there for both of us. In our need to run far from this pain, this fear, this ferocious thing that seemed inescapable, God was there. He held us in place when we were too caught up in the moment to hold ourselves.
At the very minute that she heard the diagnosis, she was one day away from leaving on a plane with her children to fly back to Malaysia where they’d live for the past four and a half years. We live in Louisiana. My daughter and her husband had moved with their children to Kuala Lumpur when he took a new job as a civil engineer there. They were to stay only two years, but they ended up staying longer. Hearing the diagnosis, fear gripped me about the cancer, of course, almost piggy-backed by the fear that she would follow through with her plans, fly back to Malaysia, and seek treatment there. Though I’d flown to Malaysia twice since they’d moved there, the thought of her seeking medical treatment in a place where we had no reason to trust the medical community was racing through my mind at a speed I can’t describe. Thankfully, both she and her husband (who’d flown back ahead of her and the children) immediately agreed that she should seek treatment at MD Anderson, and fortunately for us, that hospital was only two hours plus from our home. Her husband flew back to accompany her for her first visits to the hospital, the countless tests, and then their diagnosis. Once the date was set for her surgery, he flew with the two school-age (but so young) daughters back to Malaysia so they could start school about a week late. He would return for the surgery. So we spent time in what I can only compare to Hell together, along with her sister (my older daughter), the three of us becoming a traveling troupe to and from MD Anderson for what seemed like every week until the surgery. It’s true what we had heard, that when someone has cancer the entire family has cancer. So very true. During this time, my husband practically lost his wife. Sweet man, he knew that I was using all the emotional reservoir I had for my daughter, so there was nothing for him. He understood because he was frightened just like the rest of us. From diagnosis to surgery to chemo to radiation to reconstruction took one and half years of my daughter’s life, most of that time sick, some of it curled up in her bed in a fetal position, the covers over half her face, unable to move and at times unable to endure even the lightest touch of comfort from me. Those days the drapes stayed drawn in her room, and her only company was the stillness and darkness of her surroundings, interrupted only by me, walking as softly as I could manage, taking one of my several daily peeks at her. She was so incredibly weak, so incredibly helpless, so incredibly vulnerable and sick. Her body’s white cell count became one of the most important things in our universe, since her blood count taken before each chemo treatment determined if she would even be allowed the treatment scheduled for that day. She was defenseless against any germ, and at least once she had to be hospitalized for several days with a sinus infection. I’ll never forget when we saw her oncologist only days after she was released from the hospital, when it was time for her next visit with him and her next chemo. She was as weak as anyone I’d ever seen, tempting me to support her as she walked through the hospital to see her doctor, but knowing she would never allow that. Her doctor, knowing of her hospital stay, offered to reduce her chemo dose, but my determined daughter with her seemingly Wonder Woman mindset, while having trouble sitting up on the exam table to discuss it with her doctor, insisted on the full, 100% treatment. He and I exchanged glances, but he knew my daughter by then, knew her willingness to push herself as hard as it took to rid her body of the deadly interloper, the uninvited guest that threatened that she might miss seeing her children reach adulthood. He acquiesced, knowing better than to argue, and she was given the full dose, but she paid for it (though she would not admit it then).
There were days when, still choosing to remain in her bed, she could sit up and eat a little something. Eventually, when enough time had passed since the last dose of chemo, she’d manage to walk into her family room and spend some time on the couch, I mean lying down on the couch, a huge victory for her. It was a victory shared with her family, since the children were always happy to see her out of the bedroom. They were always allowed entry to her bedroom, though; never did she want her children kept from her, but the sight of their mommy on the sofa, even if lying down, was a boost for them allowing them to feel a sense of normalcy, if only for a short bit of time.
She and her family moved to Katy, TX to be near MD Anderson in Houston, Blessedly, my husband and I are only a bit over two hours away from the hospital, more from her home, but I was to travel that route constantly during her treatment, more accurately named her battle, and to care for her three children while she endured what she had no choice not to endure. Her husband took a new job for the move to Katy, and so he wasn’t free to go in late or come home early. I dropped my precious, young grandchildren off at school in the mornings, picked them up in the afternoons, and even helped with their elementary school homework. The youngest, three years old when his mother was diagnosed, turned four during the worst of it, grew into a master at entertaining himself in his solitude while his sisters were at school, dad at work, and I preoccupied with his mother. No matter how I tried to give him attention during the day, and I did, I would be pulled back into the snare of the cancer. Cancer is a trap from which there is no escape hatch. The only way to beat it is to endure the torture of it, the treatment for it. It’s not simply an illness. While my daughter endured the torture, and she did like a champion, we – her family – tried to avoid thinking of her mortality. I know now how afraid she was, although all she would show me then was a brave face. Not true – she did let me see her vulnerability and raw fear a couple of times, but only because she couldn’t push it down. She never wanted any of us to see it. I know now some thoughts she wouldn’t share with me then. She will reach her five-year mark in August of this year, so when that day comes, maybe it will be a happy year then. I know we’ll celebrate it.
As I said, my younger daughter’s diagnosis was in 2014. We have no history of breast cancer on either side of the family, so we were understandably shocked by the diagnosis. It was to get more bizarre and much less like reality. After her reconstruction surgery in January of 2016, which was something so unbelievably horrific it should not be allowed, her older sister (by two and a half years) was diagnosed. Breast cancer visited our family again. Now total disbelief set in as we all prepared for Round Two with the monster we had come to know so well. My husband prepared, too, for by now he was also a warrior in his way in the fight against our daughters’ cancers. My older daughter lived only nine miles from us, so her illness involved trips from our homes in Louisiana to MD Anderson for the doctor appointments and chemo treatments. As with my younger daughter, often visits to the hospital would be coupled together over two days or perhaps more, so we’d stay with her sister when that happened. Her younger sister, now helping to navigate this new journey while fighting her own PTSD, walked the familiar halls of the hospital once again, sat in the same waiting areas once again, and endured once again. It had been only four months since her reconstruction surgery. She was still not herself, but she pretended to be as she helped big sis with all that is necessary to know and do when a cancer diagnosis is yours to fight. As before, the three of us spent hour upon hour in that hospital over a span of many months sitting together awaiting either an appointment or a treatment, and as before, a daughter would spend hours and days dealing with the effects of chemo designed to cure her but seemingly designed for toture.
This daughter had what people think of as the typical effects from chemo, inability to eat, severe nausea, and dehydration. Nothing tasted good to her, and forcing herself to try anything resulted in nausea and dry heaves. We took her several times to the ER for that, and she was admitted more than once, Her blood count, the whites and reds, would be off-kilter from the poison called chemo coursing through her veins. Each girl was different during the time following a chemo treatment. While her sister had made a sanctuary of her bedroom, this one preferred to lie on her sofa most of the time. No real traveling was required for me since she is only nine miles away from us, and no school drops or pick ups were required, but I remember watching her head (wearing its knit cap from hair loss) as I sat, sentry-like, behind her in one of her living room chairs behind her head on its perch on the arm of her sofa, both of us facing the same direction, looking at the television but not really seeing. She, of course, would doze from time to time, and I was grateful when for those moments when I knew she had drifted away from the indescribable misery. I didn’t want to take any room on the sofa, but I wanted and needed (in my heart) to be as close to her as possible. Her husband works in Alaska for two weeks, then he is home for two weeks, so on the weeks he was home I was more scarce around her house unless she needed me. Many a time when I was with her, only the two of us, she’d be hungry, so hungry, and at times she’d even think she could eat. I’d bring her something, whatever she’d asked for, and she’d maybe be brave enough to take one bite. Maybe. She would look at the small morsel of whatever food was in front of her, and try her best to summon the courage to try it, knowing that she would pay dearly for only one bite. At best the one bite would unsettle her stomach worse than it was already. At worst the one bite would make her even more sick than she was minutes before trying, resulting in dry heaves. She kept “barf bags” near her at all times. Truthfully, where she was there were her barf bags. I ordered them from Amazon more than once. She lost 30 pounds in four weeks. Yes. It was hard to watch, so hard. Though the girls reacted to the chemo in such different ways, my witness was the same. Heartbroken and horrified. Frightened for my daughter, beyond sorrow that she had no choice but to endure the poison of the chemo. Eventually, as with all things in life, she finished her treatments, but not until they had tweaked them so her reaction would not be so severe, she had surgery and then reconstruction. Not before during one of her hospital stays when she and I alone endured four days and nights in a hospital room no bigger than a large closet. Her husband was at work in Alaska. She would fall asleep for the night much earlier than I; to even fall asleep at all I took strong sleeping pills for which I profusely thanked my doctor, The result of that situation was less than ideal. When my weak child would wake at night needing the bathroom, I was so deeply asleep, having stayed awake hours after she slept and then drugging myself, she would have to unplug her own IV pole and make her way through the maze of the tiny space between her bed, my chair, and the door to her bathroom. I never stirred, never heard her, and learning that was happening, thought myself to have failed as her mother.
Even more: At the same time my younger daughter was diagnosed in 2014, my younger sister was diagnosed with colon cancer. It still surprises me to type it. They were diagnosed a month apart – my younger daughter, and my younger, only sister. We did have a family history of that, but only through one set of grandparents, so it was still surprising and still, of course, terrifying. Through surgery the doctors “got” the cancer, but because she already suffered from fibromyalgia, her chemo wreacked such havoc on her system that the doctors were forced to reduce the strength of her dosages. I remember driving where she lived, almost the same distance that we drove to Houston for my daughter, but in the opposite direction. I was there for her first chemo. Of course, her husband was her caregiver. I was not there for the after effects, and to this day I regret it, but I had to be with my younger daughter. My sister never finished the chemo treatments. At the same time my older daughter learned of her cancer diagnosis in 2016, my sister’s colon cancer had metasticized to her liver. We were, as you would imagine, in disbelief from the second diagnosis of breast cancer along with my sister’s news about her liver. I remember that my feelings and mind were ricocheting between the two diagnoses. It was too much, too much. A surgeon successfully removed the spots of cancer on my sister’s liver, hallelujah, but she took no treatment. Not after the first time.
My dad had moved in with us a bit before the second diagnosis of breast cancer, the one for my older daughter, and my sister’s metastatic liver cancer. He was not ill, but he’d lost his driver’s license and couldn’t live alone without the independence of driving himself where and when he wished. His move to our home, though we were relieved and thankful, was a hard one for him at first, but he adjusted beautifully. He was already close to my husband, and he and I had always had a close father/daughter relationship, probably closer than most, so his move was almost seamless. The first problem we encountered was that he seemed to have some confusion. It led to his unintentionally breaking a few things in our home, but we realized it was a small price to pay for having him with us, to allow us to make sure was comfortable and getting what he needed. The move was made easier, too, by the fact that we lived in the same city, and he and I spoke a few times daily by phone. He ate dinner with us a few times a week, too, before he moved into our home. Every time I revisit his move, I know had that not been the case we would have had a harder time making him feel welcome. He would have had a harder time even being here with us, but as it was, our daily lives and our home were already familiar to him.
His move in October of 2015 was three months before my younger daughter’s painful and barbaric reconstruction and seven months before the diagnosis of my older daughter’s breast cancer and my sister’s metasticized colon cancer, now in her liver. He was with us, thank goodness, as his health began to deteriorate, when he was hospitalized with pneumonia – only the second time in my life my dad had been in the hospital – and when he fully recovered. He recovered because of his angel of a caregiver we’d hired. He was home and himself in time to celebrate his 90th birthday, one he’d eagerly awaited. He was also home, but we were in Houston visiting our younger daughter, two months later, when he fell and broke his hip. We made it home in record time after receiving that call. Our older daughter immediately drove to our home and was with my dad (whom she dearly loved and still does) and his care-giver when the ambulance came. We met them in the Emergency Room. That fall resulted in surgery. It was early February, 2017. My daughter was finished with her chemo and surgery. We were awaiting her reconstruction (not the kind her sister had endured). The surgery allowed Parkinson’s, which had to have been malevolently hiding in his body, to emerge and emerge in its last stages. Therapy was impossible, though my dad gave it his best effort. Finally, sometime in March, we brought him home. He had a hospital bed from his bout with the pneumonia. He was mostly cognizant, now 90, but weak. He continued to weaken. Meanwhile, my sister was holding steady – no news of a new cancer – but suffering from her fibro, suffering worse than before her chemo treatments, and the surgery for my daughter’s reconstruction was set for a day in April. We didn’t see my sister. She had moved 120 miles from us six years before, and she was not able to even travel that distance. We’d had our hands full the last three years, no time to visit her, so we simply didn’t see her. That unfortunate reality will haunt me the rest of my life.
Even so, we had experienced victories – both daughters were cancer free, and my sister’s liver cancer had been surgically removed. We would have shared a collective sigh, but we were learning to take nothing for granted.
One week from the day that my daughter’s reconstruction surgery was scheduled in Houston, my dad’s hospice nurse said she wasn’t sure I should plan to be in Houston with my daughter for the surgery. That was the first real alarm sounded about my dad’s condition. We knew, of course, that he was failing, but since he continued to converse with us, to hug us, and show his usual level of affection as the father and grandfather he’d always been, we had lulled ourselves into believing he’d be here much longer. We should have known better, and I believe somewhere we did know better, but since we didn’t want to know, we all behaved as though the time for his departure from this earth and from us was still somewhere out there in the “future” instead of how his hospice nurse sounded when she informed me about my daughter’s surgery. Her tone, though soft and gentle, left no question. My beloved, precious father was about to depart this earth, something he’d wished for since my mother died, but in doing so leave us, something he was reluctant to do. Looking back now I realize all the signs were there that he wasn’t long for this world, but we had been through enough by then, three cancers in as many years, that we needed the man he had been, the strong patriarchal figure who loved us all fiercely, who could fend off any dangers that might threaten, and a man we all loved beyond description and could not imagine having him gone.
Try as we might to pretend it wasn’t so, my dad was dying and dying soon. My younger daughter, still in Texas, drove over on what we later knew was the last Sunday of his life and had a tender visit with him, a once-in-a-lifetime kind of visit. My older daughter, living only nine miles away, saw him often, and he knew it. He was their darling grandpa, and they would not lose him easily after losing their grandmother almost nine years before. I had been with him through it all, and yet, I began second-guessing myself. Had I done enough? Had I loved enough? Had it not been for his angel of a caregiver who ended up giving care to each of us, especially me, I know his death would have been so much harder. Even now, close to two years from that time, my breathing changes and my insides turn to jelly thinking about that time, thinking of losing him, thinking of what I was still to lose that I had no knowledge of then.
My sister was not able to visit our dad, but when he died on the exact day of my daughter’s anticipated surgery (which had been postponed), she did manage to make it to the visitation and funeral. Her meds contributed to her not being quite herself, and it was as though she floated through most of it all. She, quite simply, wasn’t all there. Little did I know while losing my dad in 2017, that I’d lose my little sis and only sibling in 2018. Little did we know. That will be a story for another day. Too much to jump into now. Too much and too fresh. It’s been four months since we said good-bye to her. Too fresh.
Yes, that experience will be another story for another day.